Some palliative care nurses can be quite experienced with ALS.
Through CCAC (Community Care Access Centre – in-home healthcare paid for by the Ontario government/health card) I receive a brief nurse visit every other week. Mostly she just checks vitals and asks me how I’m doing, charting my condition. The nurse I’ve had for the past few months seems to specialize in palliative care cases (my previous nurses were not experienced with ALS, although they were also very nice). She tells me that she is currently seeing eight to different ALS patients, as well as others with different health issues. She’s an older nurse, very experienced, but also quite perky and chatty. I think she’s developed a reputation for looking after palliative care and ALS patients, and as such many are assigned to her. She’s familiar with common symptoms, ALS progression, and common medications. She’s also seen the various equipment and devices that ALS patients use in their daily life, and can be helpful in suggesting or recommending things. Recently she’s told me that it’s possible to get an in-home doctor to visit if I require a prescription and am unable to visit my family doctor for ALS doctor.
An in-home palliative care nurse can be very useful, as in addition to your ALS symptoms they will also take note of your overall health, mobility, mental health, caregivers, diet, and so on. They’ll ask about your day-to-day activities, whether you are getting out and able to interact with other people. Things that your doctor may not be monitoring, but are important to your physical and mental well-being.
